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"I just thought it was for old people": This is what it's like being diagnosed with Parkinsons in your forties

"I just thought it was for old people": This is what it's like being diagnosed with Parkinsons in your forties

Published at 7:02am 26th February 2019.

A Boston Spa woman is raising awareness of Parkinson's to coincide with Parkinson's UK's 50th anniversary. 

  • 53-year-old Nichi Macer was diagnosed 10 years ago when she was in her forties 
  • She's since raised money for charity Parkinson's UK 
  • She wants to raise awareness, saying there's many misconceptions about the disease 
  • Parkinson's UK is encouraging people to sign up for its annual 'Walk for Parkinsons' which takes place in Ripley in July 

Nichi Macer was 43 when she was diagnosed with the progressive neurological condition. 

She said:

"I was away on holiday with some girlfriends, of which one was a GP at the time. She just advised me to go to my doctors when I got home. 

"But one of the first symptoms was flicking through a magazine, I found it hard to flick through.

"Most people say, oh that's when you have the shakes. People have very limited knowledge, myself included, obviously that's a bit different now. 

"But the one thing is everybody is completely different. I'm lucky because mine hasn't developed at a great speed."

Nichi says whilst the disease hasn't developed quickly, it still affects her every day. She says shampooing her hair is difficult and she's starting to find it difficult to write. 

She said being diagnosed was hard: 

"It was very difficult. I couldn't relate it to me. 

"I just thought it was for old people. I couldn't understand it and I knew nothing about it. But you soon learn."

Nichi decided to not share the news of her diagnosis, keeping it from friends and family for eight years. 

She added: 

"It evolved really, the state I was in was this isn't me, this isn't happening to me. So to tell somebody would reconfirm that.

"And how do you tell somebody? So I didn't.

"Then time moves on and eight years later I told people when I needed to, when there was a change."

Since her diagnosis Nichi has received support from charity Parkinson's UK and has helped fundraise for the charity.

It offers both practical and emotional support to people diagnosed with the disease and their families. 

It's estimated around 145,000 people in the UK are living with Parkinson's. 

Walk for Parkinson's
Fundraisers take part in a previous 'Walk for Parkinson's'

Registration is now open for the charity's annual 'Walk for Parkinson's' event at Ripley Castle, which is being held on 14th July. 

Fundraisers can choose from a 1.5 mile, 3 mile or 10 mile walk which starts at Ripley Castle. 

Regional fundraiser Chrissie Fielder said: 

"Part of the work we've done is kill some of the myths. 

"We work with GPs, with consultants, with nurses, with care homes, we work across the board so it's easier for people to recognise.

"One of our main things is our research. We put an awful lot of store around trying to improve treatments for people with Parkinson's and to hopefully find that cure. 

"At the moment the main drug used for Parkinson's was the drug invented 50 years ago."

To register for 'Walk for Parkinson's' visit www.parkinsons.org.uk/events/walk-parkinsons-ripley

You can find out more about Parkinson's UK at www.parkinsons.org.uk

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